Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Thirty-three new projects are being funded as part of the Foundation's $100 million Infection Research Initiative.
Published on August 24, 2020
Today, the Cystic Fibrosis Foundation announced 33 academic research awards focused on improving outcomes from difficult-to-treat infections that impact people with CF. The awards, totaling nearly $15 million, will be funded through the Foundation's Infection Research Initiative: a sweeping, $100 million effort to improve detection, diagnosis, and treatment of infection. Since launching the Initiative, the Foundation has already committed more than $58 million toward this goal.
People with CF who have chronic infections are at greater risk for worsening lung disease and death, and infection remains a top concern of both patients and clinicians. Even at very young ages, more than 60 percent of individuals have at least one microorganism, and this increases to more than 80 percent in older ages. Many individuals also suffer severe side effects from long-term antibiotic use, such as hearing loss, and are at increased risk of developing antibiotic-resistant infections.
“The Cystic Fibrosis Foundation is committed to advancing novel mechanisms to detect and treat chronic infections that affect people with CF -- ultimately improving outcomes related to this serious and widespread manifestation of the disease. This funding will support a wide range of infection-related research with the potential to unlock new opportunities to address challenges people with CF face,” said Dara Riva, director of clinical research awards at the Cystic Fibrosis Foundation.
Awards included in this funding focus on addressing some of the most difficult challenges facing researchers and people with CF who have chronic infections, including detection and antimicrobial resistance.
Detection and diagnosis of infections remains a challenge in cystic fibrosis. Currently, a sputum culture is required to test for infection. With the widespread use of cystic fibrosis transmembrane conductance regulator (CFTR) modulators, many patients may no longer produce enough sputum to generate a culture to help diagnose their lung infections. Also, current diagnostic tests, can take several days to produce results.
Three of the newly funded studies seek to establish novel approaches to detect infections that do not require as much sputum and generate test results more quickly. One study funded through the Initiative will investigate usage of a blood test to diagnose multiple types of pathogens; other studies are looking into urine samples as an alternative to sputum.
Many people with CF have one or more pathogens that are resistant to antibiotic treatments, such as Pseudomonas. Bacteriophage (phage) therapy, in which viruses can be used to decrease lung inflammation caused by infections, has emerged as an area of research with the potential to fight some of these antibiotic-resistant infections.
As part of the Infection Research Initiative, the Foundation is funding more academic studies in phage than ever before. One study is researching phages to treat drug-resistant Pseudomonas infections found in sputum; another study intends to engineer phages that are active against a wider range of Burkholderia. Another project aims to create a library of phages that can kill a wide array of Burkholderia pathogens.
Additional projects awarded focus on specific challenges facing people who have nontuberculous mycobacteria, fungal, Pseudomonas, and multi-organism infections.
Also, through the SARS-CoV-2 and Cystic Fibrosis Research Award, the Foundation will be funding research in 2021 to understand if there are underlying biological differences in the way people with CF may be infected by or respond to the novel coronavirus.
On Tuesday, Aug. 25 at 6 p.m. ET, the Foundation will host an Infection Research Webinar that will provide attendees with a deep dive on some of the most promising infection research in the field.
Watch the Aug. 25 webinar.
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